Hi all isn't it awful this damn fibro I have suffered for years (Approx 22) I'm only 42 so over half my life I finally got my diagnosis on Thursday and I am awaiting a letter from my consultant so that I can make an appointment with my doctor for some new meds I have been taking co-codamol zomorph and oramorph which don't help me at all to be honest I hope these new pills will take the edge off at least I'm not too sure how much more I can take of it..It's gone 4 in the morning and I'm still awake I have terrible problems sleeping also suffer restless leg syndrome which drives me completely mad also have terrible hot/cold flushes..Also a very bad memory problem my brother actually said I should get checked at the doctors for Alzheimer's..The list is endless and to be honest I'm so bloody fed up all I seem to do is cry aswell..I feel slightly relieved at the diagnosis as I'm sure certain 'family members' thought it was in my head or that I should 'stop moaning and be greatful for what I have' which I am of course but I say don't judge until you have walked in my shoes..We don't speak anymore I keep hoping they will contact me and say sorry but I doubt that will happen I feel like ranting & raving at them to make them see what I'm going through..But really I will only upset myself further they proved they aren't true family by turning on me when I needed them the most..Has anyone else had family/friends fall out with them over 'Moaning about pain' gentle hugs to you all and I'm really sorry for having a moan but so needed to get that off my chest xxx

hello so sorry you are feeling so low I do understand when you see your GP you should tell him/her how you feel it takes time to get meds right but you need to stay strong I can tell you that talking bout your feelings will help take care hope you get some sleep soon love beth xx

Hi Kazzy you sound so upset - I am the worlds most prolific crier I am wetter than the thames. I realize you are having a lot of problems at the moment but hopefully with the right medicines you will start to feel better I cannot tell you what to take but I use Tegretol retard and it helps enormously good luck have a good day or a better one gentle hugs x gins

Hi Kazzy, sorry to hear how low you've been feeling, we have all felt like this so your not alone.

This is the perfect site to rant, rave, moan, cry and come to for advice.

Although I haven't fallen out with family members, most don't understand what we go through, although my family are gradually getting better! I have just taken the view (in the last few months) that I don't need them to justify how much pain I'm in as it just makes me feel worse!

I am on quite a lot of meds, including antidepressants which have helped immensely.I strongly recommend that you explain to your Dr exactly how you are feeling and how often you cry, it's like a viscious circle - we feel down because of the pain and lack of understanding, then because we feel down it makes our pain worse!

morning its bound to get you feeling like this its a natural thing to feel like this.and ive been feeling really down lately too but i have other personal probs thats making this much much worse.its hard as we get into a rut with this illness too.

i go on to a site thats lets helps you feel postive every day and i did a challenge and was too post 3 stickers around my home with postive thoughts.

Hi Kazzy well the one thing I can say with confidence is that "You are not alone". The symptoms you have are felt by us all, we all suffer the same, in varying degrees so rant away as much as you like and we will understand. The family thing is something I don't have a problem with, thank heavens, but I do know that many people here do share this with you. I do so hope that now you have your diagnosis that your family will start to research it and understand you better. Meantimes just rant away here to your online family and hopefully that will help you to release some of the stress and tension that you are suffering so badly. Soft hugs, speedy xx

You can moan and cry and say as much as you like here, plenty of shoulders to soak, as we all go through rough times, i am 43 and had hell of a road too and am trying to hold wrk together that i run myself and the worst thing is i have young fit healthy girls who i pay to do the job i no longer able to and have to step in all the time or hold their hand and they always moan!! I go home and i crack up at times.

As for your family if they do not want to be there and lusten and support you then let them be!

Or you can send little letters with information on diagnosis and if they do not see wood for trees after this then they not worth it, the trouble is alll those that are healthy and only get a cold now and then and we run around after them do not see that for us its like having rough flu day in day out! And the flares are extra unpredictable and worse!!

Memory what was this all about again lol

I have so much trouble remembering simplist of things now and its affecting my business and the most worrying thing about it is that we know whats happening to us.

My gran had severe dementia started late 70's into late 80's she was 1st one we expected to pass instead others passed before her with other things, so if i did have alzheimers atleast i know ir would last forever and have new friends every day !!

I think you should keep your Dr up dated and do not worry how many times you pester them as you are keeping them in a job just like i have lots of Dr customers and they keep me in business. Without us patients it would change to internet diagnoses llol since i go and they ask ME what i think .... Well i say you have 4yrs university training and a degree and i look on internet type in my symptoms and i tell you what my diagnosis possibly i say well you can have my symptoms but the rest you wrk out as i am the patient!!

Lol actually i have a good relationship with some of them!!

So you pester allll you want and make sure you asking a appointment long enough!!

Theres a few anti depressants on the market that will help and i know nobody likes admitting depression but when the river takes over the puddles you have to see your Gp.

I do not have depression as much as i have moments i just have burst pipes now and then i feel i got to be strong as i almost had a nervous breakdown in past and depression 16yrs ago and i determined not to let it take over

Oh wow I didn't expect so many lovely replies thank you all so much (Crying buckets again lol) some fab advice here...Fairycazzie how do you manage work I take my hat off to you hunny..I remember going to see doc about a year ago and begged him for just afew days supply of diazepam ( I had been given 6 after a trip to hospital with neck spasms) they were to me a wonder pill really relaxed me and for the first time felt some relief..So anyway I thought I would ask for enough for afew days just to get me through his reply was No I can't give them to you..I burst into hysterical floods of tears telling him how he has no idea what I'm going through and that I have no life and don't even want to be here anymore..His reply 'think your severely depressed' I said I am not depressed I'm in constant pain..Anyway I never did get those pills only a prescription for anti-depressants which I took for awhile but since it was this awful disease that was making me feel so very down and I didn't think I needed anti-depressants because they were something to lift my mood which isn't going to happen while I'm in constant pain vicious little circle isn't it..I tried asking different doctors including my own who would give me pretty much anything I would ask her for and even she said no..I was very close to buying them off the Internet (My mother read right through me and put a stop to that) I did manage to get some off a doc in June this year but they give me just 7 at a time and same with sleeping pills I kind of understand why they won't give them out willy nilly (My brother was addicted to diazepam many years ago and he said its reaaaally not nice) But surely there's something that we can have that really helps to take the edge off the pain that's not highly addictive,mind you aren't co-codamol, oramorph and zomorph addictive?? My consultant that diagnosed me told me them meds won't work for fibro and will make it worse..Anyone else heard this? Anyway I have managed about 2 hours sleep but how lovely to get all these notifications to say you lovely people have replied...Thank you all do much from the bottom of my heart it means so much to share it with people that truly understand. Hope you all have a good day even if it is Monday xxxx

I have been diagnosed with fibro for about two years now. I too have sleeping problems, It's horrendous isn't it?. Quite often I can still be awake when my partner is getting up to go to work!. It's heartbreaking, i'm tired and crabby all the time. I was suffering with restless legs too, my doctor put me on Amytriptolene (which is also used for depression sometimes), this helped greatly. This has now been changed to Nortryptolene. It works perfectly, my symptoms have now disappeared.

I have been on a small dose of Amytripolene since I was diagnosed 4 years ago. I do not suffer as much as many fibromites but that is partly because I am retired and live alone so can exercise when I want and rest when I please (apart from 3 days Grandma duties). Because I was feeling much better I decided to try without the Amytripolene, I soon went back on it!!! Feel so lucky that I have found a med that helps. Hope others are as fortunate. x

I can so relate to what you say Kazzy, I too am feeling very down at the moment, I struggle so much with my mind wanting to do things and my body stopping me. Friends have stopped inviting me out now because I always say no I say no because I worry I wont be able to keep up, that I will hold them back...or that they will get fed up of my moaning.....I feel my daughter doesnt really understand, the times I dont feel up to having my 11 month old grandson....she doesnt seem to get it because Im not meeting HER needs.

Anyway I could waffle on for days but I just wanted to let you know you ar NOT alone and you are amongst people that do really understand.....((((((hugs)))))) xxxx

Hi kassie. Families agghh. I have one full of teachers and nurses. I can't talk to any of them about my condition. I certainly can't moan to them. They don't want to hear. I'm lazy and work shy... Apparently lol I moan and get my head straight on sites like this. I've given up with GP's too. The stress of trying to be heard and believed always makes me cry. I have learned that this condition for me, is all about toxins and stress responses. So I don't take any prescription meds now. The side effects are horrendous and make me 10 tomes worse. I have a replacement diet which now keeps food toxins out of my system and use acupuncture and, bio resonance to balance my system. I take Q10 and magnesium, calcium and D3.... And feel a whole lot better for it. Toxins gets stored in muscles (pain) and brain (forgetting stuff) as well as some glands (hormone and stress problems). There's lots you CAN do .....I find diet amazing. it's taken a long tome bit I. know what my triggers are now. Dr myhills site has loads of info.I don't get IBS much now. Sleep is still a,major issue for me. I'm starting to use some qi gong meditation and a little melatonin (from iherb) if it gets really bad. It CAN get better kassie. If what you're doing isn't helping, then stop and research for something else?. Hope you feel better soon. One day at a time x stepper

Yes I have been told that too many meds make fibro worse and I have to say from personal experience I agree. But sometimes it would be nice to have a pain holiday and get some quality of life. I would be happy for just a wek now and agin. Right now suppose the doc won't give me a big script ad even I am worried I would take them all but having to go to docs every few days is too much to do at the moment to.

Hi. I am sorry to here what you are going through. I have had it for over 20yrs. Although I have a understanding doctor and family I still find it hard to cope with the pain and the tiredness. I have never had a day that I can say I feel well. It seems to have taken over my life. I am on quite alot of medication but it still hurts. I also have a foggy brain { thats what I call It} I somtimes cry and ask why me. I do try and be cheerful, but it is hard. I have tried hydrotherapy which is lovely while you are in there, but a hour later the pain is back. You may be lucky like some and have good days, and I hope you will. I whent to a Fibromyagia support group quit a few years ago now and they gave me a list of what happens with Fybro and and to give to my family and freinds which helped them to understand my condition. The problem I find is that when they have the meatings I am not well enough to go, Know i have found this site I dont feel alone. Good luck to you and hope that you will have good days. Take care x

It seems to me you are trapped in a vicious circle. Because of the pain your cannot sleep which makes you miserable and in more pain. Have you tried having a blood temperature bath with a mug od Epsom salts in? It may help you to relax a little bit and then get a bit more sleep.

Hiya Kazzy, everything u have written is exactly how i feel! i have had fibro for bout 10 years and as the years progressed i have got worse with the pain. Depression is also linked to fibro coz the diease makes you feel so down. As for restless legs my legs giver a big suge of what i call a rippple effect and then they fling out all ova the place lol. i didnt realise that memory loss was connected until i joined this group/site last week!! i have to write down where i am going and also write down how to get there.

Hi Kazzy, diagnosed in 1991, but had major back probs since 1983 after a parachute jump. I find that hydrotherapy helps if you have any pools that do it near you. Also I have a Acticare which i think is a Electrotherapy pain relief. Use pads and leads, can use as TSE but also has much better things on it to use that really help. Works on accumulative effect. The TSE didnt help me but the other parts did. Has helped when nothing else does. You can use it on various parts of the body and use it so many different ways. Reading this back it sounds a bit garbled but it does help. I too often cry and get upset so I totally understand and people think here she goes again, 'whats wrong now'. what do you think pain and useless brain, duh. Most of family dont understand and I no longer keep in touch with them, they used to make me feel like it was all my fault and that I should just get on with it, but others are good. I really do understand and my heart goes out to you. I use clonazepan at night and melatonin to get to sleep and most of the time it does. Most fibros have low levels of serontonin so maybe a anti-depressant would help. Though sometimes, it takes time to find the right one, so it really might help you to try it out.

Hi. I to have lost my friends and family to fibro. I have moved and know that it is goodbye to family for good now. It is so sad to hear of so many others without family support, but so good that there is such support and friendship here.

Have a good talk with your doctor (make a double appointment) and go through your medication options. As 1 member above said, antidepressants also help sleep(slightly) and deaden nerve paths. I find it good to lie quietly for as long as I can when sleep won't come. My thinking is that at least my body and eyes are resting some. I have had no more than 20 hours sleep for the past week, but have added another 14 of rest. It helps my eyes be less gritty at least.

There are muscle relaxants too that can make a huge difference. Check out the medication tags here and the links on Heath Unlocked and take notes to your appointment so you can work with your doctor.

I really feel for you Kazzy - I'm really down at the moment too. There are good friends on here who won't judge, just support you. I'm lucky my family understands and are very supportive, but sometimes it just gets too much. Gentle, warm hugs. xxx

Gentle hugs kazzy.... thank goodness we can all come here for the support we really need when things get unbearable (regularly for me..) my diagnosis was in May this year, but I have had symptoms for over 10 years I sincerely hope things ease for you soon! Carol xx

Hi all sorry I haven't been on in a coupl of days but thank you all once again for your lovely messages of support an advice I will certainly take it all on board and try things out one at a time I do need to try and get this under control..I have aqua aerobics on a Tuesday nights do looking forward to that later it really helps even if it's only for afew hours it's worth it for those few hours of pain relief. Hoping your all having as good a day as possible I'm so glad I stumbled upon this site you are all truly amazing. Gentle hugs to each & everyone of you Kazzy xxx

Hi thereI am suffering too at present.My body is out of alignment helping my husband after his hip replacement and also am having the hot/cold flushes and not sleeping too well, even by going to bed at 9.00 the pain is so bad and am allergic to most of the medicines.I stay strong and will go to a manipular next week as he is on holiday this week.Will also have some acupuncture which works for me.I took have had a family fallout with my daughter who does not seem to understand that we need help from family not long term just a little.We have always been there for them and helped them out BUT no.Friends have offered more help but am embarrassed because things have been left because of our situation.Of course STRESS is playing a huge part in this I know its a vicious circle I am trying to break.Fibrofog has kicked in a little too.Never mind, onwards and upwards it will not last forever; its just a flareup but of course will never go completely.I am glad I have the support of this forum it certainly does help to know you are not alone and not going mad as family seem to think.Take care.soft gentle hugs.BE POSITIVE I know its hard when in pain.

Hi there, i was diogmoised with Fibro/M,E last oct, i am on amitiptyline, tramadol. which my doc has just given me a high dose as i was still in pain, i am getting hot/cold flushes, i have trouble sleepimg,my memory is very bad at times, i also have osteoarthritis in my right leg which i have to take pain killers for, and am supposed to use a walking stick,sometimes i want to cry with the pain.xx